One mom's journey through life, love, and loss.

January 10, 2019

January 10th – the day I said enough’s enough and took you into the ER. I knew in my gut the bruising you were experiencing was NOT NORMAL. It felt like the whole world thought I was crazy, “She’s a kid, they bruise.” I was terrified walking into that hospital that day. I knew there were going to be questions and a lot of them. I knew we were going to get the “that kid looks abused” looks and sideways glances. The first Nurse that saw us was completely taken by surprise and I knew exactly what she was thinking. The questions began, does she live with you, does she go to day care, are you in control of everyone she is around in a day. I looked at that nurse and I said, “I know she is not being mistreated, I know deep in my heart that we have the best day home in the city and this little girl is nothing but loved. That’s why we are here, she doesn’t hardly move and she has new bruises.” Honestly, from that first bruise I knew something was really wrong. Once I told the nurse that it was a flurry of blood tests, doctors, and more questions. The first doctor we saw looked me in the eye and said “This is most definitely a bone marrow issue, is there family history of leukemia?” Cue my whole world crashing down. He then told me that he was going to draw blood and have the pediatrician come in and see you. He left the room and I immediately called your Dad and your Grandma. I didn’t tell them that he suspected cancer but I did tell them it could be something with your bone marrow. I did tell your dad that we would be at the hospital for a while now. At this point I didn’t have any more answers and just a whole bunch more questions and fears.

The lab came down and took your blood and you amazed your Mama with how well you did, only a few small tears. a little while after the blood work was done we met Dr. Gali for the first time. She was and still is an angel in disguise. She sat me down and said, “Don’t worry – it’s not leukemia. Her platelet count is dangerously low, should be 150,000 but is at 6,000. Her white blood count and red blood count are excellent. This tells me she has ITP. We are going to admit her overnight and give her a course of IVIG to help strengthen her platelets.” At this point we got admitted and they inserted an IV line and took us up to women’s and children’s. You were treated like royalty. The nurses all loved you and were all so great to us. More Angels. Daddy brought us some supper and your books and teddy’s. You tolerated the drugs well and we were home the next afternoon. Your platelet count rose and continued to rise for the next 10 or 11 days. We went to Grandma and Grandpa’s, we met new friends, we were happy and you were healed. The Sunday we were leaving Grandma and Grandpa’s I noticed some red spots on your cheek by your eye and I knew your numbers had fallen again. We weren’t out of the woods yet.

I’ve been struggling this week with the memories of your bruises and feeling so much relief when the doctor’s told us it was “just ITP” and it didn’t seem like a big deal. I think that hurts more because in hindsight it was a huge deal. For you it wasn’t a simple thing that was easy to fix. For most kids it is but for you it wasn’t. I’m angry that I had such a false sense of hope the whole time. You weren’t responding to treatment quickly but you were responding slightly and we were all so happy about that. I know that it was necessary for me to have that hope as if I didn’t we wouldn’t have gotten as far as we did. Without that hope I would have been more of an emotional, miserable wreck than I already was. I’ll never forget after you died and Dr Jagga said to me, “I had a professor once that said to us, If I had to choose between my child having ITP and Leukemia, I would choose Leukemia. We all thought that professor was crazy. Until we saw cases like Eva’s that it just does not get better and horrible things happen. Leukemia has, for the most part, a cure.” People with children that have/had cancer will read this and probably be upset. Not for a second am I making light of cancer, not for a second am I wishing you had cancer. All I’m wishing is that this disease had a cure. That there was more of a process and set treatment plan for ITP. All I am wishing for is that my daughter was still here in my arms. All I’m wishing for is for not another parent to have the “Oh, it’s just ITP, one IVIG and she will be fine.” talk with a doctor and then later have their world come crashing down because “It’s just ITP”. For some people/children it is just ITP, but for others it’s not. Just ITP stole you from me. Ripped you right out of my arms.

New Years and this week have been harder that I ever expected they might be. This week wasn’t even on my radar at all for “hard days”. I guess it shouldn’t have been a surprise that I would be emotional over it. It doesn’t take much to make Mama emotional and moody these days. I drug my butt out of bed today and I made it in to work. I will get through this day just like I have every other day since you left. I think over the next while I’m going to write about your journey as the days come up. There’s is a lot for me to process and a lot that many people don’t know about your journey and just how hard you fought. January 10 was just barley that start of a very hard fight. I’m so glad you fought as hard as you did until the very end. I thank God every day for every single day we had with you. I wouldn’t change what happened if it meant I didn’t get those days with you. If I new this was going to be the road we would walk I still would marry your daddy and bring you into the world because I know just how special you are. I know that your story isn’t over yet. We will change something about this, even if it is the tiniest thing, in honor of you. I have no idea what that looks like yet, and most days my grief is too raw to even look past the current day, but we will get there. I promise!

I love you and miss you every single day. I would give anything to have you in my arms. I know your daddy would too. Your daddy and I had a heart to heart on the weekend and I told him, “You know full well that if it was allowed I wouldn’t be here today. It would be you and your girl because I know you are the best daddy and I wouldn’t have to worry about either of you.” I stand by that. I would have traded places with you in a heart beat. No questions asked. I LOVE YOU TURKEY BIRD.